Wednesday, January 11, 2012

You probably know that our twins have autism. What you probably don't know, what most people don't know,it isn't what you think of from TV. It's not awkward people who speak brokenly and converse little or poorly. It's nothing like that.Autism is not one thing. When you have strep throat, you have a specific bacteria and they can see it and medical science goes "Oh HAI Streptococcus here have some penicillin - BEGONE!." Sort of like that.

But, if you have autism, it's more of "Hmmm something is wrong, lets make a list of the things that aren't right and if enough of them fall into THIS sort of category, we'll call it Autism." That's why it's a spectrum - it's a sick rainbow of verbal and mental disability. The kind you don't want any part of.

At our house we dabble in a variety of severe autism that could certainly be worse but also is bad enough that we get fierce envy of those with moderate autism or even Aspergers. It causes stress and strife in ways I pretty much leave off this blog but it's making the headlines today because I'm cranky and feeling more than a bit selfish.

My sweet Miles, my boy who cuddles and kisses and says I love also has other problems. First of all, he has a form of separation anxiety when it comes to me that basically means he is with me, a few feet away, at all time when he is at home. He throws tantrums of both the bratty and the autistic kind. The most frustrating thing about Miles, until recently, is that he CAN speak. He can SAY anything. He can read and write and he can do math. At school. At home he's nearly nonverbal other than the nonstop echolalia (that's where the repeat stuff randomly, nonstop in our case).

We've started to have trouble though. Tantrums, spitting at people at school over the past few months. Screaming, raving, hitting, the sort of tantrums we don't get at home. Now in the mornings on the bus, he is screaming his hitting and kicking and spitting to the point that it's going to be a problem. It'll be our second go round with spitting on the bus. Last time they started talking "spit guard" but then, the bus driver and the administration had a go round and we got a new bus driver and started from zero.

But now it's looming. I feel it pressing down on me, and so does the husband. It's like when we're in public and one or both of them is "acting autistic" but people are looking at us like we're crazy. You know, because they "look normal" but don't "act normal".

Here we are.

My first reaction was, I don't care how much he screams and kicks and yells. I have THREE KIDS TO GET TO SCHOOL PLUS MYSELF TO WORK OMG I CANNOT DRIVE HIM TO SCHOOL.

My life, to a lesser degree than my husbands, is dictated to me by autism. My sleep last night for example, interrupted until about 2am by crying or screaming boys, is never guaranteed. My free time, ditto. I'm typing as fast as I can right now because disaster looms around every corner.

The twins are BEHIND me right now. I can't see them. They could be doing ANYTHING.

My only pure moments of alone, Gidge time, exist in my bed when I am asleep (see above Miles goes into the bathroom with me always), and about 45 minutes every morning. Every morning after the twins get on the bus, I get the oldest boy out of bed and serve him breakfast and escape to this computer with a cup of coffee.

I talk to my people inside the shiny box. I do stuff that makes me happy. I shut off my brain and I escape. Into stupid hobbies and conversations and, it's wonderful. Then my time is up and I hop up and run off into the world.

But as I lay in their bed between them with one of them sobbing for no apparent reason and the other one singing ABCs, it just sort of washed over me that I was going to have to. Selfishness isn't an option when you are a parent. It's a luxury when you get to indulge in it. But, my child is terrorizing the other children on that bus by his behavior. How would I feel if MY special little boy was being terrorized by the bad child on the bus? I'd be pretty upset.

I want to protect his dignity, I don't want a spit guard he's not Hannibal Lector. I just want.......I want this to stop. So I've told the husband to contact the school to see what we can do.

I was able to be selfish and self indulgent for 34 years. And then I became a mother. I turned in that card on the day Lou was born.

I resent it. Because I want to be young and free. But the truth of the matter is, if I were faced with no children or these children, I'd take these children 100% of the time.

2
comments:

I'm sorry its so hard going. I really hope it can be resolved without the spit guard. Do keep talking with the school...in my experience the more parents are willing to talk about options the more willing the school is to accommodate your views. You are an exceptional Mum and I think you do deserve the rare timeouts. Its not silly, it keeps your sanity. Huggs.